The restriction of the freedom to play an active role in society

2012: The ethical issues linked to restrictions of freedom of people with dementia

Section 2.3 focused on restrictions of the freedom of people with dementia to behave and express themselves in accordance with their personal values, beliefs and preferences. Section 2.4 also addresses such issues but focuses on those which have implications for the freedom to play an active role in society (i.e. politically, economically and socially).

The first issue addressed is that of voting which represents a civil act (and even obligation in some countries) and marks the participation of adults in the democratic societies in which they live. This is followed by a brief discussion of restrictions of freedom of people with dementia related to decisions with legal implications. The example of marrying is briefly addressed, which follows on from the discussion about relationships in section 2.3 but focuses on the ethical issues linked to the legal implications of marriage and of the assessment of the capacity to marry rather than on the personal and emotional issues involved. There are several types of decision with legal implications (see subsection 2.4.2) but it was decided to discuss that of making a will in more detail as it is unique in that it often represents the final expression of a person’s will, extending beyond that person’s capacity to express such will and is often only made known and in some cases challenged after the person’s death.

The section ends with a discussion about the ethical implications of driving. Driving is also a very personal matter. For some people it is a pleasure, for others a necessity. Giving up driving is often equated by people with dementia with a loss of freedom and independence. In many cases, it has a negative impact on their ability to play an active role in society, resulting in social isolation and exclusion. Driving also has legal implications based on the need to protect drivers and other members of society from harm.

1.4.1 Voting

1.4.1.1 The current situation and probable future changes

In Belgium, Greece, Italy, Luxembourg, Cyprus and Latvia, people are obliged to vote but in Greece and Luxembourg people over the age of 70 and 75 respectively are not (Inclusion Europe, 2011). People with intellectual disabilities do not participate to the same extent in general elections as the rest of the population. An estimated 20% participation rate of people with intellectual disabilities was observed in Sweden in 1998 and in the UK, the percentage was estimated at 31% in 2010.

In some countries, such as Hungary, people were until recently automatically deprived of the right to vote if under any kind of guardianship. However, a landmark ruling at the European Court of Human Rights ruled that automatic disenfranchisement was contrary to certain European and international agreements to which Hungary was party.

In 2012, the Council of Europe adopted a recommendation on the participation of people with disabilities in political and public life. These recommendations are not legally binding but were adopted by consensus by all 47 member states. Moreover, the European Court of Human Rights often cites such recommendations in its judgements. This recommendation is particularly important as it builds on the UN Convention on the Rights of Persons with Disabilities, calling for European governments to ensure that their legislations overall does not discriminate against persons with disabilities in political and public life. All adult citizens with disabilities should have the right to vote, the recommendation states, adding that laws should be ‘devoid’ of discriminatory provisions. It specifies that all ‘persons with disabilities, whether they have physical, sensory, or intellectual impairments, mental health problems or chronic illnesses, have the right to vote on the same basis as other citizens, and should not be deprived of this right by any law limiting their legal capacity, by any judicial or other decision or by any other measure based on their disability, cognitive functioning or perceived capacity’ (MDAC, 2011).

According to Redley, Hughes and Holland (2010, p.466), “Voting is a political right, not a matter of competence to make decisions”. Consequently, people should not be excluded from voting just because they have a disability. The new Council of Europe recommendation suggests that there should be no necessary legal capacity to vote. Whether a person has the necessary physical and mental capacity to vote is a separate issue. Apart from making a wise, informed decision, which many people fail to do, voting requires the ability to get to the polling station on time and indicate one’s choice in such a way that it will be officially recognised as being valid by those responsible for the organisation of the election and the counting of the ballots. In some countries, it is possible to vote by post.

1.4.1.2 The capacity to vote

There is limited literature on the capacity to vote. Appelbaum, Bonnie and Karlawish (2005) have developed a tool to measure voting capacity called the Competency Assessment Tool for Voting (CAT-V). They found a strong correlation between the severity of dementia and the capacity to vote. In France, legislation recently changed from people with mental disorders needing exceptional authorisation to vote (i.e. they were otherwise barred from voting) to the situation whereby an individual/special ruling is needed to deny the right of a person with mental disability to vote. However, in the light of the Council of Europe ruling, issues related to the capacity to vote become less important as it is likely that people with dementia will, in the future, have the right to vote irrespective of capacity.

1.4.1.3 The desire to vote and possible benefits

A study by Bullenkamp and Voges (2004) in Mannheim (Germany) involving 110 participants (out of 215 community dwelling people with mental health problems) found that voting led to enhanced social engagement and self-esteem. Similarly, a diagnosis of dementia has not been found to preclude the desire or ability to vote (Karlawish et al., 2004). Voting is therefore linked to the principles of beneficence, quality of life, social inclusion. Failure to allow and enable people with dementia to vote fails to respect their autonomy and is discriminatory in that it does not permit them to participate in society on an equal basis with other citizens.

1.4.1.4 Obstacles to voting faced by people with dementia

Deprivation of the right to vote by care staff

According to a UK study (reported in Regan, 2011), residents in residential homes for elderly mental infirm (EMI) in the UK have been denied the right to vote on the basis of an assessment of their capacity by nursing and residential care home staff. Consequently, people with dementia in nursing homes have additional obstacles to voting compared to those living in the community. Those who are living in their own homes in the community might simply go and vote whereas those living in residential homes may be subjected to assessments of the capacity. This amounts to discrimination and a possible abuse of power. This also raises the question of the competence of nurses and care staff to evaluate the capacity to vote.

Blocking access to political information

Staff may also be involved in a form of gatekeeping in terms of regulating access to people with dementia by politicians and their representatives trying to drum up support for their party and access to television emissions and other information from politicians (e.g. leaflets and pamphlets) which would inform people with dementia about what the different parties are offering.

Computerized voting methods

In some countries, computerized voting systems are now used. This may be off-putting not only to people with dementia who may fear being unable to use the system but also to older generations who are not familiar with computer technology. De Cauwer (2005) asked 41 people with dementia living in the community about their experience of the 2003 federal elections in Belgium. The majority (i.e. 28) of those asked had voted. Amongst those who did not vote only 1 was put off by the computerised voting (according to that person’s carer). However, most needed assistance using the computerised system which according to De Cauwer (2005) raises concerns about confidentiality and suggests that the use of such systems might in fact dissuade people with dementia from voting. There is also the issue of undue influence in that the person who helps (e.g. a relative or voting official) might exert influence on the voter or trick them into voting for a different candidate.

1.4.1.5 Recommendations on voting

There should be clear governmental guidelines on how to maximise the potential for people with dementia in long-term care to vote.

Transport issues must be considered for people with dementia to ensure that they can get safely to and from the polling station.

A trained and neutral person should be made responsible for overseeing/providing assistance to people with dementia at the polling station on an interpersonal basis and by ensuring that the procedure and environment is dementia friendly.

In keeping with the principle of reasonable accommodation, it should be possible for an accompanying person to enter into the voting booth with the person with dementia in order to provide assistance, if requested by the latter.

Absentee voting (i.e. from a distance) should be possible for people with dementia (especially those in residential care or hospitals. This raises the issue as to who fills in the ballot and whether it is posted.

Managers of care homes should ensure that residents are not prevented from voting due to administrative details linked to their current place of residence (i.e. they may need to be enrolled on a different voting register. This depends on the regulations in each country).

Electoral officials should facilitate voting in care homes by enabling registration and voting in large care homes, which could bring residents from other homes for the same purposes at the appropriate time. The necessary funds should be provided to electoral officials to make this possible.

Residents with dementia in care homes should have access to timely information about upcoming elections.

Residents with dementia in care homes should have access to campaigning political candidates (if they wish such contact) and to relevant information available to the public during the election campaigns.

Residents with dementia in care homes or hospitals should have the right to ask for assistance with voting from any person they wish and not be obliged to be assisted by a specific approved assistant.

Care homes and hospitals should have a person available to assist residents and patients desiring to vote, should they wish to ask for such assistance from that person. The training and assistance provided by that person should be provided on a non-partisan basis.

It should be possible for people with dementia to make an advance directive for voting (especially useful in the case of people who vote on a lifelong basis for the same party) but should have the right to cancel that specific advance directive at any time, even when they are judged as lacking capacity.

Nobody should be allowed to vote on behalf of a person with dementia unless such authority and guidelines were given by the person with dementia when they had the capacity to make such a decision, and it is legal to do so.

A person should be allowed to go into the voting ballot with the person with dementia to assist with the process of voting (if the person with dementia clearly wishes this).

1.4.2 Making decisions with legal implications

Some decisions have legal implications (i.e. have consequences which are determined by the law). A minimum threshold of relevant capacity may be required to make such decisions. Examples include marrying, making a civil partnership, divorcing, making certain commercial contracts, accessing legal aid/justice (e.g. defending oneself in court or taking out a law suit against someone), making a will or a donation and handling one’s finances. Maintaining the right to make such decisions is closely linked to respecting individuality, personhood, autonomy, privacy, equity and social inclusion. However, the main emphasis is often on the financial implications of such decisions.

Taking the example of marriage, the legal implications of this are that couples are bound to each other under law. It is a legally binding contract and the assets and liabilities of the two parties are considered as joint (Woolley and Co., 2008). This in turn has an impact on inheritances. Legislation in most countries specifies that individuals wishing to marry must have the necessary capacity to do so (Alzheimer Europe, 2010). The legal threshold for such decisions is generally quite low (Peisah et al., 2008) and focuses on an understanding of the nature of marriage and the expectations and responsibilities associated with it (which have developed over time and correspond to cultural and sometimes religious beliefs about relationships and families). Financial matters are rarely referred to directly.

Financial abuse may occur as a direct consequence of the changes in the financial responsibilities of the couple. A person with dementia might, for example, be persuaded to enter into a marriage based on a deficit of judgement, through passive acquiescence or failure to understand the implications it would have for them (Peisah et al., 2008)). This could equally apply to other contractual agreements with legal implications. The law seems to focus on the protection of financial rights. This is given greater importance than ensuring other aspects of people’s wellbeing. Protection against financial abuse could be considered as reflecting the principles of beneficence and non-maleficence. However, there is a risk that it is primarily the family’s financial affairs which are being protected and not those of the person with dementia. Inappropriate or out-dated legislation, which does not take into account the task specific nature of capacity, fails to respect the autonomy of people with dementia. In some cases, restrictions may serve the interests of other individuals who may stand to benefit from the loss of a particular right (e.g. to remarry, sell property, make a donation or change a will). Similarly, the loss of the right – and/or opportunity - to access directly legal advice and representation (i.e. by oneself rather than with the approval or assistance of a legal guardian) may render people with dementia more vulnerable and open to abuse. A typical fear that people have of dementia is of not being listened to or taken seriously (Boustani et al., 2008). The loss of the above-mentioned rights may be perceived by people with dementia as evidence of this.

Being deprived of the right to make decisions with legal implications should be based on evidence of incapacity and justified on the grounds that it is in the person’s best interests (not solely the person’s best financial interests). In some countries, the establishment of a particular guardianship measure can have an automatic consequence on the right to make certain decisions. This is based on a one-off assessment of capacity, usually established by a legal court with the assistance of relevant experts (e.g. a psychiatrist, geriatrician or neurologist depending on the country). Once the person has been declared legally incapacitated (a decision which is often made public), they are prevented from making certain decisions with legal implications irrespective of whether they have the capacity for individual decisions. This constitutes a potential disregard of a person’s autonomy.

In some countries, a person who is under guardianship must obtain authorisation to make certain decisions which are legally binding. In Luxembourg, for example, a person who is subject to curatorship cannot marry without the authorisation of the curator or tutelary judge, and a person who is subject to tutorship cannot marry without the authorization of the “family council”. This has implications for the power relationships within families, and renders the person in question open to abuse from relatives with conflicting interests. The process is also patronizing and infantilizing. Fortunately, there has been a recent move towards fairer forms of guardianship in which guardians are expected to promote the person’s remaining capacities, provide decision-making support when necessary and take into consideration the person’s wishes when deciding on their behalf.

In the following section, an example of a decision with legal implications, namely that of making a will (sometimes called “a last testament”), is discussed in more detail.

1.4.2.1 Making a will

Making a will differs somewhat from other decisions with legal implications as it can be a very personal decision which is often made in private, sometimes unknown even to close relatives, and for which capacity is often queried retrospectively. Having the right to make a will means being free to dispose of one’s assets and treasured belongings as one sees fit. It is an act which has legal implications but can also be an expression of one’s character and an opportunity to make a last statement. In some ways it is similar to some of the acts mentioned above which have legal implications in that it requires that a person is recognised as having the necessary and relevant capacity to carry out that act (i.e. to make a will). In some respects, it is different because the legal implications only occur after the person’s death.

Testamentary capacity – the criteria

A person is generally considered to have testamentary capacity if they fulfill certain criteria, namely that they:

Understand that they are disposing of their money, possessions and assets.

Are of sound disposing mind (i.e. can recognise the extent and character of the property and dispose of it with understanding and reason).

Can recall and understand the claims of potential heirs.

Do not have a disorder of the mind, such as delusions or hallucinations, which would influence their decisions.

Are not subject to undue influence or pressure from others.

Understand that making a new will revokes any previous wills.

Some authors describe testamentary capacity as the lowest level of competence (less than entering into a contract, for example, in which the adverse party seeks an advantageous position). A counter argument is that the testator may have an adversarial relationship with other members of the family or there may be one between two parties contending for the inheritance (Bursztajn and Brodsky, undated). Also, testamentary capacity is situation-specific. Consequently, the level of cognition needed for simple, uncomplicated wills is much lower than that needed for more complex legacies (e.g. involving larger sums and complex family dynamics) (Shulman et al., 2007). Davis (2005) suggests that nowadays the nature of possessions is more complex than it was in previous centuries. Some people have property managers and advisors and may not even know their shareholdings or real estate details.

With regard to recalling and recognising the claims of potential heirs, it must be borne in mind that people with dementia may eventually have difficulty recognising their friends and relatives. Whether a person must simply have knowledge that they have relatives who may have claims to their estate or actually be able to physically recognise them is not clear.

The condition that testators should not have a disorder of the mind which could influence their decisions raises a few issues such as lucid intervals, delusions and hallucinations and unwise decisions. A lucid interval has been defined as a period of relative mental clarity between periods of irrationality, especially in organic mental disorders such as delirium and dementia (Mosby's Medical Dictionary, 8th edition, 2009). With regard to delusions, Davis (2005) differentiates between paranoid ideation (which is often a suspicion which can be reasoned with or challenged) and a delusional belief (which tends to be fixed and resist reasoning or being challenged). He states that neither necessarily corresponds to a lack of testamentary capacity. The will of a person known to have experienced delusions may be challenged but the type of delusion is important. Testators must only be free ofinterferingdelusions and this is not dependent on the absence or presence of a psychiatric diagnosis.

The capacity to make a will does not preclude the right to be eccentric, to make decisions considered as weird or to make stupid or unwise decisions. In the case Smith vs. Smith (1891), it was decided that “stupid error” in reasoning or drawing conclusions was not proof of a lack of testamentary capacity. Similarly, there is also a long-established principle that capable testators have the right to dispose of their possessions and assets as they see fit even if motivated by malice, pride or bizarre reasons. People with dementia with testamentary capacity should not be denied these rights. However, in the case of dementia, due to stereotypes about lack of capacity, it may be more difficult to prove retrospectively that unwise, eccentric or unexpected decisions are not signs of incapacity.

With regard to undue pressure, claims are sometimes made that someone has exerted undue pressure on an older or vulnerable person in order to benefit from some of their inheritance. Hall et al. (2009) point out that undue pressure often occurs in situation involving a power imbalance or dependency. The term “undue influence” refers to something which destroys the free agency of the testator and substitutes that of another (Perr, 1980) (e.g. by means of coercion, compulsion or restraint resulting in the wishes expressed not reflecting those of the testator). Wishes may also be influenced by fraud or deception. Perr (1980) suggests that less influence may be needed to control the will of a person whose functional abilities have been severely impaired by mental illness or a physical condition affecting mental functioning.

Establishing testamentary capacity

The capacity to make a will is one form of capacity amongst others. Lack of capacity in other areas of life is not sufficient proof of the incapacity to make a will. Nevertheless, it is possible that the will of a person who had dementia when it was written might be challenged.

In Kenwood v Adams (1975), the golden rule was established which stated that the capacity and understanding of the testator ought to be witnessed or approved by a medical practitioner whose examination and findings should be recorded and preserved. This is described as a precaution and not considered as sufficient proof of testamentary capacity but highly regarded and likely to make it very difficult to challenge, on the grounds of incapacity, the will of a person who did this.

Bursztajn and Brodsky (undated, p.5) raise the issue of the involvement of treating physicians in assessments of testamentary capacity (particularly in situations involving deathbed revisions of wills). The desire to relieve the patient’s suffering may preclude necessary objectivity. The clinician may confuse the capacity to consent to treatment with the capacity to dispose of one’s possessions. Whilst medical professionals are often asked to determine whether a person has or had testamentary capacity, there is little guidance and a lack of appropriate tools to assist them in this task.

Challenging testamentary capacity retrospectively

It has been suggested that the growing number of people with dementia creates a fertile ground for challenges to wills (Shulman et al., 2007). A will made by a competent person cannot be invalidated on the grounds that they lacked capacity at the time of their death. Similarly, insanityper sedoes not necessarily invalidate a will (as explained above).

According to Kahn et al. (undated), clinicians in the UK (England) are regularly asked to assess retrospectively patients’ testamentary capacity. It is claimed that decisions based on retrospective assessments are often made “on the balance of probabilities” which is a lower standard of proof than “beyond reasonable doubt” which is used in criminal cases. This might be different in other countries. Often, the clinicians have to rely on limited evidence from medical files and prior scores on the MMSE. The MMSE is not a measure of testamentary capacity but it continues to play an important role in retrospective assessments of testamentary capacity.

Davis (2005) claims that most wills are challenged on the basis of the testator’s capacity to identify, evaluate and discriminate between the respective strengths of the claims of their potential beneficiaries. Shulman et al. (2005) reviewed reasons for wills being challenged and found that the main reason was a dramatic or radical change from a previous will (72% of cases). The second main reason was alleged undue influence (56% of cases). In just over half of these cases, the testator had no children and in almost half of cases the will being challenged had been written less than one year before the testator’s death.

Often challenges are made years after the person’s death when memories of the person have faded. Some people may recall the person in the time leading up to their death when they had few remaining capacities and not at the time the will was written when that person may have had full testamentary capacity.

Redmond (1987) suggests that there is a discrepancy between the assessment of competence at the time a will is made and the retrospective assessment of competence in terms of information provided, people involved and access to supporting documents. The initial assessment is often made by people who have little if any knowledge of the testator. There is a basic presumption that the person has testamentary capacity. When a will is challenged, medical records are consulted, relatives and expert witnesses are interviewed who knew the person well. It is much easier to prove that a person has capacity whilst they are alive than retrospectively. Nevertheless, Maki-Petäjä-Leinonen (2010) points out that in Finland retrospective challenges to wills by family members are rarely successful as it is difficult to obtain evidence of lack of testamentary capacity. Clearly, there may be differences in how retrospective challenges to testamentary capacity are dealt with in different countries and how successful they are likely to be. Some authors such as Hall (2009) and Bennet and Hallen (2004) suggest that people with dementia take precautions to help reduce the likelihood of their testamentary capacity being successfully challenged after their death, and provide guidelines for healthcare professionals who are asked to make retrospective assessments of testamentary capacity. These are included in the recommendations below.

1.4.2.2 Recommendations on making decisions with legal implications

General

There should be no automatic loss of the freedom to make decisions with legal implications based on a global assessment of capacity or on the establishment of a guardianship measure.

The legal practice of declaring a person legally incompetent (globally rather than in relation to specific tasks) should be abolished.

Nobody should be permitted to make a decision with legal implications on behalf of a person who can demonstrate that they have the capacity to take that specific decision themselves or with the appropriate level of support.

There should be an independent authority, either a person or an organisation, to whom any person who is denied the right to make a decision about their own life can appeal. They should have access to an independent advocate to assist them in this.

Testamentary capacity

Health care professionals who are asked to assess testamentary capacity, either currently or retrospectively, should check whether there are/were suspicious circumstances such as radical changes from previously expressed wishes or wills, and possible signs of undue influence/pressure, deceit or fraud from members of the person’s entourage.

The stage of dementia and/or evidence of delusions should only be taken into consideration if they are considered relevant to decisions made by the testator in their will.

Expressions of individuality, eccentricity, unwise decisions or personal/emotional grounds for decisions should not be considered as evidence of testamentary incapacity (i.e. any more than they would be for a person who did not have dementia).

Where there is a suspicion that a will might be challenged on the grounds of lack of testamentary capacity, the discussion, drafting and signing of the document should be visually recorded (e.g. on videotape or digitally) subject to the consent of the testator.

Testators who are concerned that their testamentary capacity might be challenged retrospectively should consider obtaining expert medical proof of their capacity, bearing in mind that this might also lead to closer scrutiny of such capacity.

1.4.3 Driving

The ethical issues related to driving are mainly related to autonomy, beneficence/non maleficence, confidentiality (medical secrecy) and quality of life.

1.4.3.1 The importance of driving for people with dementia

Not everyone with dementia is or was a driver. Some have never had a driving licence or car. Others may have already sold their car for other reasons (e.g. based on the cost of running a car or as a result of moving into a small community). Those who are drivers are likely to be faced at some point with the realisation that they can no longer drive safely or with the obligatory cessation of driving.

Like many other people without a car, people with dementia who are obliged to stop driving may have to rely on public transport, which is limited in some areas (e.g. one bus per day and no train station). In addition, dementia often entails a range of impairments which may render the use of public transport impractical. For example, people with dementia may have problems handling money (but need to pay fares), have problems with gait (but need to get on and off a bus, travel whilst standing up and move along a moving bus) and difficulties with planning and disorientation in time (but need to work out timetables and organise their time). The loss of the right to drive may therefore have a serious impact on their lives and also on the lives of partners who do not drive.

Loss of the right to drive may result in less out-of-home activity, social isolation, depressive symptoms and even increase the risk of entry into residential care, all of which may affect a person’s physical and mental wellbeing as well as their quality of life (Freeman et al., 2006; Marottoli et al., 2000). In some cases, loss of a driving licence may affect the ability of the person with dementia to contribute towards society through paid or voluntary work.

In addition to the practical and functional aspects of mobility, older people and people with dementia often appreciate the qualitative aspects of driving. Many older people, for example, enjoy driving and consider it a hobby and even a motivating factor in their lives (Arai et al., 2010). People with dementia have described driving as being important to their quality of life (Adler and Kuskowski, 2003). Arai et al. (2010) therefore suggest that in addition to finding solutions to the mobility aspect of driving (i.e. how to get from A to B), attempts be made to find alternatives to the qualitative aspects of driving (e.g. by increasing the opportunities for social interaction and helping people to find something else that is meaningful and brings quality to their lives).

With reference to older people’s cessation of driving (i.e. including many people with dementia), there are psychological issues to be considered linked to the disruption of social roles, to the perceived threat to one’s person’s identity, loss of self-esteem, loss of independence, loss of spontaneity and becoming dependent on others (Fonda et al., 2001; Ragland et al., 2005; Rudman et al., 2006; Whitehead et al., 2006). If the loss of the right to drive was influenced by the advice or persuasion of other people (such as relatives, friends or the general practitioner), there may also be resentment and a deterioration in the relationship between the person with dementia and those people (Haltiwanger and Underwood, 2011).

1.4.3.2 Are people with dementia who drive a risk?

It is frequently argued that people with dementia are potentially dangerous to themselves and others. Sometimes, this claim is restricted to people with dementia who have lost the capacity to drive but sometimes it is suggested that a mere diagnosis of dementia indicates that a person might at some time represent a danger when driving and as it is not known at what point this occurs, they should be prevented from driving. It has been estimated that there is an eightfold risk of car accidents of people with mild or moderate Alzheimer’s disease (AD) compared to drivers who do not have AD (Bieliauskas, 2005; Friedland et al.,1988).

However, as Burns and Harris (1996) point out young male drivers have the highest risk of car accidents with the odds of them being involved in accidents being comparable to patients in the fourth year of progressive cognitive decline. In Japan in 2008, older drivers were the third highest risk group after those in the 16-24 age group (the highest risk group) and those in the 25-29 age group (the second highest risk group) (Arai, Mizuno and Arai, 2010). The order of risk per age group was identical in a survey carried out in New Zealand (Hoggarth et al., 2011). Nevertheless, as young male drivers are not prevented from driving, it could be considered discriminatory to prevent people diagnosed with dementia from driving. Also, the measurement of injuries and deaths in different age groups is perhaps misleading as their incidence may be inflated by the tendency for older drivers to be more physically fragile than younger drivers resulting in the same kind of accident having more serious physical consequences (Hoggarth et al., 2011). Also, being involved in a car accident should not be confused with being responsible for a car accident.

According to Anstey et al. (2005), older drivers are more vulnerable to crashes. Some physical limitations, which are more common in older people, may affect driving safety. Examples include arthritis, problems with eyesight, slower reactions times, specific disease and certain medication. Anstey et al. (2005) further suggest that some degree of cognitive decline linked to normal ageing (particularly with regard to attention) may affect the ability to perform complex tasks such as driving. It is generally agreed that dementia is a risk factor for driving (Brown and Ott, 2004; Dobbs, Carr and Morris, 2002). Compared to the general population of drivers, those who have dementia are considered as being at increased risk of unsafe driving (Man-Son-Hing et al., 2007; Uc et al., 2006), although a few studies suggest that crashes are not frequent (Carr, Duchek and Morris, 2000).

However, Hoffman Snyder (2005) points out that different types of dementia do not all present the same type or level of risk for driving. She describes the different risks associated with cortical, subcortical and mixed types of dementia. It is important to understand these differences when considering whether a person is fit to drive and when designing tools to assess driving capacity.

1.4.3.3 Stopping driving

Arguments in favour of allowing people with dementia to drive focus on their right to lead autonomous lives and the fact that a diagnosis of dementia does not imply the automatic loss of driving capacity. But at what point does an individual driver with dementia become an actual risk?

Often, people with dementia make an autonomous decision to stop driving and use public transport or take measures to maximise their safety, such as sticking to quiet, familiar roads, not driving at night or in the rain or snow, or only driving when accompanied (Adler, 2010). A counter argument is that people with dementia may lack insight and consequently be unaware of the point at which they lack the capacity to drive. Approximately, 40 to 50% of drivers with dementia continue driving following diagnosis (Carr, 1997; Lloyd et al., 2001). Driving represents a last freedom and expression of autonomy for some people. It is an integral part of their lifestyle and enables some to avoid isolation and remain part of the community. Driving may also be symbolic of adult status. It is therefore possible that some people will continue driving in full knowledge that they are losing the capacity.

When people with dementia are not willing to stop driving and ignore possible requests from their relatives and friends, the latter sometimes take measures to stop them such as hiding keys, disabling the car, making the person believe it is out of order, parking it out of sight or even selling it if they have the right. Such measures might be considered as patronising, failing to respect the autonomy of the person with dementia, dishonest and deceitful or on the contrary, as protecting a person who lacks insight into the dangerousness of their behaviour. If the person is fully aware that they lack driving capacity but refuses to stop, such measures might still be ethically justifiable if aimed at protecting other people. In this context, whilst many people consider driving as a right, it has also been described as a societal privilege (Hoffman Snyder, 2005) granted on the condition that people abide by the laws governing driving.

In accordance with the principle of non-discrimination, concrete action is needed to provide a framework in which people who have lost their driving licences as a result of dementia are not excluded from participating fully in society. These might be the same measures designed to ensure the participation and social inclusion of other non-drivers but additional measures might be needed to ease the transition from being a driver to losing one’s licence based on dementia, and also to address the specific needs of people with dementia who may have become dependent on having a car.

In Appendix 2, James McKillop, who has been diagnosed with vascular dementia, describes his experience of driving and the impact of losing the right to drive.

1.4.3.4 Formal assessment of driving competency

There are several ways to approach the assessment of driving capacity, such as neuropsychological/cognitive tests, on-road testing, driving simulation and carer reports. Assessments of driving competence must cover not only the capacity to drive (the skills required) but also whether the person can drive safely. There seems to be a general consensus in the literature that cognitive tests alone should not be considered sufficient to withdraw a person’s driving licence but that they can be helpful in deciding whether to refer a person with dementia for an on-road test (Lincoln et al., 2010).

General practitioners (GPs) may be responsible for determining whether a person is medically fit to drive. This means that the person has no medical condition which would interfere with the ability to drive or if they have, and it has the potential to interfere with driving, this is not currently the case for a particular person (Hoggarth et al., 2011). If the GP declares that a person may be unfit to drive, this might be followed up by a formal assessment (but maybe in some countries not). However, so long as the GP does not signal any problem, the person is likely to continue driving. According to Hoggarth et al. (2011), the capacity to drive can only be assessed through observation of a person driving on a road and is impossible to assess in a GP clinic unless there are extremely reliable reports (e.g. from the traffic police) about the person’s unsafe driving behaviour.

Many people who drive safely would have a problem if they had to retake the test as nowadays, there are also tests for theory. If this involves the ability to write or manipulate computerized gadgets, this would be unfair as it would involve testing a capacity which is not actually relevant to the practice of driving. The ability to pass a test is not what should be being measured by a test for driving competence.

Capacity is task specific and affected by a range of factors (e.g. the environment, the time of day and the situation). Incapacity in one domain does not necessarily imply incapacity in another domain. However, tests for driving competence involve a range of additional tasks which might have a negative impact on driving performance on the day of the test (e.g. finding the place of the test, finding the right room in a huge hospital complex which is badly signposted and being given lots of forms to fill in first). The associated challenges are not part of the capacity to drive.

It could be argued that, in real life, driving will sometimes be preceded by disturbing events or conditions but this cannot be presumed. A person with dementia has the right to drive when they feel up to it. In some types of dementia, the capacity to drive might fluctuate. To draw a parallel, a person would probably decide not to drive when suffering from severe migraine. A counter argument might be that the person with dementia might lack insight as to when they have driving capacity. However, the fact remains that a test of driving competence should measure driving competence and that alone. A medical driving assessment used in New Zealand takes 45 minutes and is “on the road”. It is not aimed at ensuring a stringent observance of road rules and people are therefore not penalised for driving errors commonly made by drivers amongst the general public (Hoggarth et al., 2011).

When a person is learning to drive, they can try to the pass the test as many times as they like. In some cases, they may fail one day and succeed a couple of weeks later. It is unlikely that their driving capacity improves in two weeks. Driving tests are stressful and in the case of dementia, it may be perceived as one’s last chance and that one’s independence is at stake. This must surely add to the stress of being tested. For this reason alone, people with dementia should be entitled to at least a second test. As this is a medical issue, the cost of assessment should be covered by state health insurances. If not, the cost should be low and in no way comparable to the costs paid by people acquiring a driving licence for the first time. Otherwise, a person could lose the right to drive (even though perhaps still fit to drive) as a result of not having the financial means to prove otherwise. This would amount to discrimination against people on a low income. As older people tend to be on lower incomes, this would amount to ageism.

If a person with dementia passes an on-road driving assessment, they may nevertheless experience difficulties driving at some point in the future, even in the very near future. Fox et al. (1997) found that 4 out of 7 people with dementia failed a second driving assessment, taken six months after the first. Conclusions cannot be drawn from such a small number of cases but a few other researchers recommend on-road assessment every six months (Adler et al., 2005; Duchek et al., 2003).

1.4.3.5 Confidentiality vs. safety

In some countries, GPs are legally obliged to report people who are considered unfit to drive (e.g. due to dementia) or who have been diagnosed with dementia to the vehicle licencing authorities or the police. This could be considered as unethical as it interferes with the principle of confidentiality of medical information. The question is – “Is it a medical practitioner’s ethical obligation to check whether a person with dementia is still driving or only to react if it comes to their knowledge that the person is a driver?”

Reporting a patient to the relevant authorities may affect the relationship of trust between the doctor and the patient, violates the principle of patient confidentiality and may result in patients breaking off contact with the doctor (Hoffman Snyder, 2005). Failure to pursue a diagnosis (if people feel that they risk losing their licence) may result in the loss of the potential benefit of services and treatment for dementia.

1.4.3.6 Recommendations on driving

A diagnosis of dementia, a low MMSE score or a driving offence should not be considered as proof of incapacity to drive.

Tests to measure driving capacity should involve on-road testing and not rely solely on computerised, paper, verbal or other forms of assessment.

GPs should discuss the topic of driving with any of their patients known to have dementia.

If, having first discussed the issue with the patient, the GP is concerned that a patient with dementia who is unfit to drive is still driving, they should take the necessary legal or administrative steps for that person to be tested.

The driving capacity of people diagnosed with dementia should be assessed on a regular basis (e.g. every six months) with increasing frequency as the condition becomes more severe.

Should the person with dementia fail a test to assess their driving capacity, they should be permitted to retake the test before any permanent measures are taken to limit their right to drive, but should not be allowed to drive until/unless they have passed that test.

Measures to restrict the right to drive should be appropriate and proportionate.

Governments should consider the possibility of restricting driving depending on individual cases and the nature of the incapacity or difficulty.

Driver refresher courses for older drivers should be recommended (e.g. by driving associations such as the AA or ADAC) in an attempt to raise awareness about safety issues.

Guidance for older people should be provided on signs to look out for which might indicate that their capacity to drive has worsened.

In accordance with the principle of non-discrimination, governments should take measures to ensure that people with dementia are not prevented from full and effective participation in society on an equal basis with others as a result of the loss of the right to drive. Employers and service providers should be encouraged to explore alternative measures (“reasonable accommodation”) which could assist participation.

Measures should be developed to address the practical, emotional and psychological consequences of losing the right to drive as a result of dementia.

Acknowledgements

The above information was published in the 2012 Report "The ethical issues linked to restrictions of freedowm of people with dementia" as part of Alzheimer Europe's 2011 Work Plan which received funding from the European Union in the framework of the Health Programme. Alzheimer Europe gratefully acknowledges the support it has received frm Fondation Médéric Alzheimer Europe and the Alzheimer Europe Foundation for the development and publication of this report.